Ketogenic Diet Help needed

NZ Ann

Member
Can anyone help me work out if the Ketogenic Diet I've been on for 4 weeks is doing me more harm than good.
I'm on 10% carbs, 20% protein 70%fats or 38g carbs, 75g protein, 115g fat.
Taking magnesium, vit b's, plenty of fluids and some extra salt.
I've being doing this diet for 4 weeks and my energy levels have seriously declined from being housebound most of the time to being bed bound for much of the day. I was expecting temporary drop in energy levels but not this bad!
My blood ketone monitor suggests that I'm not in ketosis with a constant level of only 0.4
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Can anyone help me work out if the Ketogenic Diet I've been on for 4 weeks is doing me more harm than good.
I'm on 10% carbs, 20% protein 70%fats or 38g carbs, 75g protein, 115g fat.
Taking magnesium, vit b's, plenty of fluids and some extra salt.
I've being doing this diet for 4 weeks and my energy levels have seriously declined from being housebound most of the time to being bed bound for much of the day. I was expecting temporary drop in energy levels but not this bad!
My blood ketone monitor suggests that I'm not in ketosis with a constant level of only 0.4

I'm certainly not an expert but maybe you should pull back or adjust the diet. I'm all for ketogenic diets. I think they make sense for ME/CFS/FM but while some people do significantly better on ketogenic diets a few people do really poorly on them and then have trouble when they get off them. I don't know which threads they are on but those stories really caught my eye. Check out the resource section (see below) for mistakes that can be made on the diet and ways to avoid problems.

Hopefully others will chime in.

https://www.healthrising.org/forums/resources/ketogenic-diet-resources.117/

https://www.healthrising.org/blog/2017/06/16/ketogenic-diets-fibromyalgia-mecfs-review/

https://www.healthrising.org/blog/2...yndrome-fibromyalgia-ketogenic-success-story/
 
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Remy

Administrator
Can anyone help me work out if the Ketogenic Diet I've been on for 4 weeks is doing me more harm than good.
I'm on 10% carbs, 20% protein 70%fats or 38g carbs, 75g protein, 115g fat.
Taking magnesium, vit b's, plenty of fluids and some extra salt.
I've being doing this diet for 4 weeks and my energy levels have seriously declined from being housebound most of the time to being bed bound for much of the day. I was expecting temporary drop in energy levels but not this bad!
My blood ketone monitor suggests that I'm not in ketosis with a constant level of only 0.4
I would try adding some exogenous ketones or eating some extra coconut oil. With that level, it sounds like your body hasn't learned to use fat metabolism very well yet and exogenous sources can help.

Also make sure to take in sufficient electrolytes.
 

jaminhealth

Well-Known Member
I would try adding some exogenous ketones or eating some extra coconut oil. With that level, it sounds like your body hasn't learned to use fat metabolism very well yet and exogenous sources can help.

Also make sure to take in sufficient electrolytes.

I would make adjustments as I read some info lately that we need more protein and I know when I eat some good animal protein, I get a good energy lift. I don't measure everything out but just avoid a lot of WHITE foods like breads, pasta, noodles, rice etc etc...and more veggies and protein and good clean spring water.

Here is just one link on more protein needed:

http://www.doctormaryjayne.com/doctor-maryjayne-on-wellness/8-protein-muscle-tone-and-aging
 

boolybooly

New Member
I am on a ketogenic diet and monitor daily with ketostix.

I have found that any refined carb at all will knock the ketosis out and I get a zero test.

But a high lipid diet including carb from wholegrains can still promote ketosis.

e.g. my evening snack is often homemade digestive biscuits with rapeseed oil in and mayonnaise on top and this will usually promote ketosis if I had a meat and veg lunch (excluding potato which I dont eat).

But if I have noodles or a whiteflour pancake or a banana that day forget it.

The digestives have rolled oats, wholemeal flour and flax in them as well as lo salt and I would say the meal is 50% lipid tops and a high percent carb but its complex unrefined carb.

So I deduce in my own case its not simply about loading with lipid or excluding carb but the kind of carb matters as my body will use refined carb over lipid if its available, so in my own case I know it is essential to exclude all refined carb to get ketosis going. This includes white flour, all sugary foods and I believe potato would probably be like these but as I say I dont eat potato anyway because of the nightshade toxicity which I react to.

That is what I have observed in my own diet and I hope it helps.
 
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NZ Ann

Member
Thank you for your reply boolbooly
I continued on keto genic Diet for 5 weeks. During this time I didn't have any refined carbs. I only got my carbs from the vegetables which was 50gms a day. I went from housebound to bed bound and needing someone to look after me as I had absolutely no energy. I also permanently had the shakes even though my blood sugar was normal. Obviously being in this state I couldn't continue the diet and went back on to a whole food diet. Within 24 hours the shaking had stopped and 2 weeks later I was back to my old energy levels. I came to the conclusion that my body is not capable of deriving all of its energy from fat metabolism. But it was worth a try even if it did get a bit scary!
 

Remy

Administrator
Can anyone help me work out if the Ketogenic Diet I've been on for 4 weeks is doing me more harm than good.
I'm on 10% carbs, 20% protein 70%fats or 38g carbs, 75g protein, 115g fat.
Taking magnesium, vit b's, plenty of fluids and some extra salt.
I've being doing this diet for 4 weeks and my energy levels have seriously declined from being housebound most of the time to being bed bound for much of the day. I was expecting temporary drop in energy levels but not this bad!
My blood ketone monitor suggests that I'm not in ketosis with a constant level of only 0.4
0.4 is nutritional ketosis. So you are in ketosis at that level.

I think that it is especially difficult for our population to switch over to fat burning which is unfortunate because we need an alternate energy source the most. I would consider trying some exogenous ketone salts to help bridge the gap and also look at other electrolytes than just sodium.
 

boolybooly

New Member
Well I can sympathise as I have found diet tricky. Though we are all unique and cant be sure what helps one will help another.

My ketogenic diet was preceded by a couple of years of diet restriction because I was gaining weight. Before that time I was eating carby things to get energy and would get get headaches if I didnt get enough but was also pacing for ME and slowly getting heavier, reaching 14.5 stone at one point and I felt I was in danger of getting diabetes etc. My current is 11.5.

None of the ME metabolomics had been done so I was going by intuition. I had to cut down on food intake but had to avoid low energy headaches. I found that if I ate early enough in the day I didnt get headaches all day and eventually arrived at a solution borrowed from Tibetan buddhist retreat practice which is to eat all my food for the day in the morning so I felt full for a time (because the compulsion to eat when hungry was lessened by having felt full recently) and then not eat anything after 12 noon. This made me feel hungry in the evening but I consciously accepted this as a necessity because that feeling is a sign of body fat reserves being mobilised which meant I was losing weight. So I think this additionally got my ketogenic metabolism working.

At the time I would start the day with a fresh veg salad and oily dressing. But I have also run into problems with salicylates now (causing oedema and more headaches) and so I have since switched to oat bran porridge and as a matter of interest coconut oil is a no-no now for me because of the high level of salicylates in it.

EDIT - forgot to say the whole point of my post which was that when I switched to the weight loss diet it took time for the new calory restriction to show, as my system was full of food and I had plenty of body fat, so the weight loss was not apparent for about a month.
 
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Not dead yet!

Well-Known Member
Thank you for your reply boolbooly
I continued on keto genic Diet for 5 weeks. During this time I didn't have any refined carbs. I only got my carbs from the vegetables which was 50gms a day. I went from housebound to bed bound and needing someone to look after me as I had absolutely no energy. I also permanently had the shakes even though my blood sugar was normal. Obviously being in this state I couldn't continue the diet and went back on to a whole food diet. Within 24 hours the shaking had stopped and 2 weeks later I was back to my old energy levels. I came to the conclusion that my body is not capable of deriving all of its energy from fat metabolism. But it was worth a try even if it did get a bit scary!

Looks like you made the right choice for you. For the record, I deal with the "shakes" too, and also muscle aches that I didn't understand until I got my DNA results from 23andme. I now make the assumption that my muscles suffer from the loss of too much carbohydrate, because I have the "power athlete" gene and I'm homozygous for it. Which means, my body doesn't get a choice, it makes much more strength muscle fibers than endurance ones. Although it would be logical for endurance to = carbs, that's not always the case. For power, sprinting, and quick reaction, the muscles must have a ready supply of many chemicals and enzymes. I'm not sure that they are all easily made from fats, I'd have to recheck.

Long story short: your body makes special energy molecules so that you have some energy to move in the first 10-30 sec of any activity, whether it's reaching for the lamp to turn it on, or beginning a timed sprint. Otherwise it would be, "Tell muscle to move." (Wait 10-30 sec for glycogen to be broken down.) Now you move. From what I gather, people with my genetics make more of those precursor molecules, and the time is longer. Hence, more power / strength. Any romp through Youtube for "strongman contest" will show that strength requires not only large muscles but a ton of calories. None of those guys, to my knowledge, is keto. Nor do they care if they are very large, including carrying extra fat on top of giant muscles, usually on a very tall build.

So I've backed up a bit from keto also, first because of the shakes and aches, and now because my genetics is telling me something. But previously my wya of dealing with it is:

1. Warm baths with epsom salt.
2. Something like Emergen-C but with less sugar, my current favorite is PowerPak, for electrolytes. This can stop the aching in minutes.
3. Glucose. Yeah, I know, the opposite of keto. But it didn't seem to push me out of keto for longer than two hours per 4mg tablet. Stops the shakes. One reason I could cheat like that is I used the children's definition of keto as much as possible. My %fat approached 85% on some days. But I was counting by measuring my diet in grams. If you want to know the trick to doing that, the only book I know that has the formulas is: Ketogenic Diets
4. Oxygen. This is good for most people with ME/CFS. But it can really help with muscle aches.
5. Recently I looked into my new thyroid drug, called liothyronine. It helps increase metabolism of oxygen and glucose. I haven't tried it on a strict keto diet, but on a more general one, I can tell my recovery from activity is increased. I don't want to speak too soon, but my muscle aches from yesterday's activity are minimal compared to what they usually are.

I had some negative effects from stopping the keto diet. I was using it to curb migraines, and as a result I've had about two migraines a month since I stopped being strict -- compared to 1 every 2 months before. My current carbs per day is around 100-125g which is still low, but it's not keto anymore, it's just controlled carb. Note that sometimes people will quote 400g of carbs per day as normal. It's not. That's the number found in research about endurance athletes. THEY need that much, not everyone.

Recent studies talk about how ME/CFS patients have more AMPK than usual. This is a... molecule? hormone? messenger? to the body that says "stop what you're doing, you're out of energy." It also spurs the growth of new muscle and connective tissue to support whatever activity you were doing. It's partly the source of the "wall" that runners talk about. Some or most of us have that messenger sending that message constantly. Since glycogen is an intrinsic part of the building of new muscle cells, it's possible that many ME/CFS patients can't make the metabolic switch to keto. At least not with a reasonable amount of discomfort.

One way to check is to try a fast. When I fast I feel pretty bad for the first couple of days, but then I'm ok, if a little shaky. The end effect is that I feel much much better once I stop the fast, I mean, better than before. If the fast doesn't work, or you begin vomiting, then no, there is no way for your body to switch to keto. In 24 hours you're "in keto" if you fast on water alone. Bad effects can show after 18 hours though, so if you start to vomit, immediately stop, you're missing an enzyme. Tell your doctor to test you if he/she can, for any missing liver enzymes. If no horrible thing happens for 24 hours besides feeling like you have a flu, and you make it for 36 hours, and the flu becomes a mild one or it goes away... then theoretically you're able to do keto for short periods. Children are transitioned to keto like that, with a supervised fast. Some of them can continue to the diet, and others can't do the diet effectively and therapeutically.

We're not all the same. Viva la difference! :) Many wishes for your recovery and good health!
 

Remy

Administrator
Recent studies talk about how ME/CFS patients have more AMPK than usual. This is a... molecule? hormone? messenger? to the body that says "stop what you're doing, you're out of energy."
The study from 2015 found that MECFS patients had lower levels of AMPK..."The main findings were that, compared with unstimulated cells, cultures from the healthy group had significant increased levels of AMP-activated protein kinase (AMPK) phosphorylation and glucose uptake after a full 16 hours of ‘exercise’ simulated by EPS, while cultures from ME/CFS patients showed no such increases."

Is there another study with contradictory findings?

While it's true that our unique tolerance for carbohydrate various considerably, the inability to enter nutritional ketosis is a big clue that metabolic flexibility has been lost. I don't think this is a good thing at all.
 

Not dead yet!

Well-Known Member
The study from 2015 found that MECFS patients had lower levels of AMPK..."The main findings were that, compared with unstimulated cells, cultures from the healthy group had significant increased levels of AMP-activated protein kinase (AMPK) phosphorylation and glucose uptake after a full 16 hours of ‘exercise’ simulated by EPS, while cultures from ME/CFS patients showed no such increases."

Is there another study with contradictory findings?

While it's true that our unique tolerance for carbohydrate various considerably, the inability to enter nutritional ketosis is a big clue that metabolic flexibility has been lost. I don't think this is a good thing at all.


Maybe I misread it, I could've sworn that it was too much, not too little AMPK. I guess this needs clarification and references, but I"m having a crash atm.
 

Not dead yet!

Well-Known Member
The study from 2015 found that MECFS patients had lower levels of AMPK..."The main findings were that, compared with unstimulated cells, cultures from the healthy group had significant increased levels of AMP-activated protein kinase (AMPK) phosphorylation and glucose uptake after a full 16 hours of ‘exercise’ simulated by EPS, while cultures from ME/CFS patients showed no such increases."

Is there another study with contradictory findings?

While it's true that our unique tolerance for carbohydrate various considerably, the inability to enter nutritional ketosis is a big clue that metabolic flexibility has been lost. I don't think this is a good thing at all.


OK finally feeling a bit better, of course it's the middle of the night now, lol. What an illness! :rolleyes:

Anyway, I found the article you're referring to and we're both right, it's activation of AMPK, (not quantity of it) that is lower in CFS patients. I have the feeling that there was another similar mention of AMPK on this forum at some point, but I didn't find it.

The figures/charts in the article show that AMPK is higher in CFS patients at first, but it doesn't respond to stimulation in vitro. The glucose chart, I take that to mean that uptake is higher at rest because AMPK is directing the body to maintain homeostasis (in plain words: remodel/rebuild to be ready for the next exertion). But when the exertion comes, the body can't respond, partly because of the lack of activation. My guess is that since AMPK was already there, it can't be activated further, I mean it's like turning on a light that's already on. But it's a guess.

I wish I knew more about this. I first learned about AMPK from an exercise phisiologist, but in an odd way I also learned from my (athletic) parents who described the activity of it in a way that fit.
 

jaminhealth

Well-Known Member
Commit to getting off sugars/carbs and MOST WHITE FOODS and the weight will stay in a good place...veggies, protein and water...

A treat now and then but NOT daily, don't need that daily so called treat....

Have an orange or apple or some berries...
 

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